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A month ago, 10-year-old Sophia Weaver was struggling to recover from a surgery. For four days, she was unresponsive. Nurses struggled to insert an IV in her arm and her organs were faltering. Mom, Natalie Weaver, watched doctors tend to her daughter and felt profound sadness. But she also realized her daughter was trying to tell her something.
“It just dawned on me: Her body is tired. It took me some time to process that,” Weaver told TODAY Parents.
Sophia has Rett syndrome, Type 1 diabetes and severe facial deformities. She’s experienced 29 surgeries, numerous procedures and takes loads of medications.
“Typically, she handles them pretty well,” Weaver said. “We decided to take her away from intensive medical care. We invited in hospice care.”
For the past three years, Weaver has been advocating for her daughter and others with disabilities. She convinced Twitter to include disability discrimination in its harassment reporting tool, in response to the many hateful and violent comments she has gotten when she posts photos of Sophia. She shares pictures to help normalize facial deformities and disabilities and started a foundation, Sophia’s Voice, which provides money to families with severely disabled children. While Weaver always fought for Sophia, she did so with her daughter’s happiness in mind.
“Sophia’s entire life, I would say I would listen to what my daughter's body was telling me,” she said. "It is telling me she is tired."
The family doesn't want to overwhelmed with sadness so they’re using this time to help Sophia “live her best life" by helping her experience bucket-list activities. Some of the things they’ve done are things that able-bodied people take for granted, such as going to a hair salon.
“A local salon owner opened up (early) and gave Sophia the full treatment and she even got green hair extensions,” Weaver said. “She absolutely loved it.”
Sophia has a weakened immune system, so she's at risk for contracting an infection or illness if she is in public with crowds. That’s why she had never been to a movie theater or a mall. A local cinema recently offered a private screening so Sophia could see her first movie in a theater.
“All of these amazing things, she is going to be able to experience,” Weaver said.
The family has a GoFundMe to support their adventures and they’re taking suggestions from followers about what bucket list items to do. Recently, the family spent a weekend at cabin in the mountains where Sophia enjoyed a soak in a hot tub. They hope to rent an RV and take Sophia across the United States so she can see landmarks, such as Yellowstone National Park. And, this week Sophia received a unique doll from a company called "A Doll Like Me."
“It just brought me to tears to see my child in a doll,” Weaver said. “The doll has her colostomy bag, her feeding tube and she’s got her permanent heart-shaped smile like Sophia.”
Sophia’s eyes lit up with excitement when she saw her doll. To her mother, it represents so much more.
“When Sophia is no longer here I will be able to hold something that looks like her,” she said. “It means the world to me.”
Weaver shares pictures on social media from their adventures to create lasting memories. But she’s also trying to help people understand what hospice care is.
“She is doing OK. People think hospice and they think immediately she is dying,” Weaver explained. “I have always done everything I could to give her the best possible life … these changes are necessary for her.”